This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!
Living with CF for 19 years has been a struggle: school, homework, treatments and my job. My name is Charity, I was diagnosed with CF when I was 3 months old. I am the third of four sisters. I believe it was hard on my parents and my siblings to watch me struggle with pain. My dad was always working to support us, my mom spent most of her time taking care of me.
I was in the hospital a lot when I was little and I know that wasn’t easy on my family. I often had long hospital stays. My Mom never left me because she didn’t trust all the doctors. It was hard on my sisters because they had to go to school, so they stayed with extended family members. They would visit and bring presents whenever they could.
The older I got (from 13 to 17 years old) the more I forgot to take my meds, and do my treatments. I got in trouble from time to time because I just wanted so badly to be like everyone else and be able to do the things that normal kids could do. My mom always told me I couldn’t and that made me mad.
I never understood why I always had to go to the doctor every 3 months and nobody else did, I was furious with my mom. I promised myself after I turned 18 years old that I was never ever going to another doctor’s appointment .
But here I am, an adult, and I realize how important it is to see my doctor on a regular basis. And my supportive boyfriend Blake made sure I was doing my treatments. Eventually I moved in with Blakes family, my Mother kicked me out.
I bought my first car it was a red Chevy Impala. I really hated doing my treatments and taking my medications, but Blake has made sure that I did it all. Blake came into my life and has never left. I have been on my own since I was 18 and I’m almost 20 years old. It’s been hard because I can’t work as much as other people, I always get sick. Medical bills are difficult to pay. Recently I went to the emergency room because I was having really bad chest pains, it was the start of pneumonia. They gave me antibiotics and pain medicine and it hasn’t started working yet. That’s my story.
– Charity, Illinois
My daughter Graysen was diagnosed “late” at 10 months old after an intense beginning of life. She was a preemie born at 34 weeks old and was in the NICU for 17 days and even with the NICU stay, she was not diagnosed with CF until after 2 inconclusive newborn screen test and many other tests. Finally, after RSV and failure to thrive, her pediatrician went back to CF and decided to get a definitive answer if CF was causing her issues. Sure enough after the sweat test and genetic testing, she was diagnosed at 10 months. Even though it was a very difficult diagnosis, it was helpful to know what we were up against and how to progress from there. Now she is a thriving 3 year old with little to no problems, who has caught up developmentally and physically with her peers. She is in preschool and loving every minute of school, friends, soccer, dance and taekwondo. I try not to limit her time or keep her in a bubble and with her daily treatments, she continues to thrive and grow.
– Hayley, NC
As a young boy growing up I always had breathing problems. My parents said I had Asthma and was treated for that on a daily basis but I still had many health issues. My mother who was a nurse saw that I got the medical care. I was tested with a sweat gland test but passed . Not until later in life and after Military Service and moving to Austin did I find out what I really had. For many years I just thought Asthma was the problem. At the age of 40 I was feeling ill and went to the VA to see a Doctor; when he walked into the room he heard me cough and said to me, ” I think you might have CF.” I did not know what he was talking about. He took blood and sent it off to the Mayo Clinic and I found out two weeks later that I had CF. That moment now put a name to the enemy and I could fight it. I have been blessed with great doctors and support. Life with CF has changed me, as I get older PFT’s have gone down and I have to make adjustments, but there is light at the end of the tunnel. The support systems that are in place for CF families and PTs are wonderful. Prayers and Blessings to all!
– Ron, Leander, TX
Share Your Story
Anytime is a great time to tell your CF story! We’re listening… change someone’s life with your story. Fill out the form to share your experience.